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Newly diagnosed, afraid of meds, but cortisone shots helped

Going to give some details and backstory so you know where I'm at prior to the questions I have:
I'm 37 and just got diagnosed with RA, but I have had increasing pain over 3 years. It affects my hands/fingers, wrists, shoulders, hips, knees, neck, and rarely feet & ankles.
About 1 month ago I could barely get dressed and putting on a coat was murderous. I had bought nearly every kitchen gadget because my fingers were so swollen and painful I could barely grab tupperware out of the fridge, much less use a knife successfully.
I saw an ortho doc last month and he gave the final referral (after being chased down incorrect paths to every other specialist [neurologist etc]), and he asked which joints hurt the worst and I said hand/fingers and wrist followed closely by shoulders. He said he couldn't do cortisone in the wrists/fingers/hands because joints are too small, but he did give cortisone shots in each shoulder. I was told this would ONLY affect shoulders, have NO systemic effects whatsoever. Within 30 minutes my joints started feeling a bit better. Within 3 days my joints felt pretty dang good! Within 2 weeks I had almost NO pain or swelling in ANY of my joints in my entire body. Ortho doc said it shouldn't happen. Rhuemy doc said that shouldn't happen. But a few google searches shows that yes, a small amount can be absorbed systemically but it usually short lived (like 3 days to a week). I'm going on 5 weeks now and my pain/swelling is just now starting to trickle back in. I called a friend who has had PRA for 26 years and she confirms (has had a dozen + cortisone shots in various joints) that YES this is possible, especially if you are hypersensitive to meds (which I am).
So, my first question is, how many of y'all have experienced this? Also, how often do you get cortisone shots (I know ortho doc said only every 3 months per joint)? And if this worked so ridiculously well for me through my whole body, with nearly NO side effects- why is this not, or perhaps could it be, a legitimate treatment for me? I know cortisone (aka corticosteroids) work better than almost anything at reducing inflammation by retarding your immune system, which is exactly what dMards & biologics do right?
My other question/statement is: I'm terrified of taking my first prescription med leflunomide, because I've always been absurdly sensitive to meds (so is my dad so maybe it's genetic) and I'm always the one that gets almost all the terrible side effects. I know I should suck it up and just try it (and I will) but I'm curious if any of y'all are super sensitive to all meds and what your dealings with these drugs have been?
I always feel more confident and less stressed with more information, so I've been doing research like crazy, but I can't really find info with this specificity, everything is so generalized. So I would very much appreciate any input y'all have! Thank you in advance!

  1. First off I want to say that yes, for sure, cortisone can be absorbed throughout the body and it is no surprise it makes you feel better. Prednisone/cortisone is a bazooka of full of your body's own medicine cure-all molecule that basically makes everything better and is what they use for RA when nothing else works. UNFORTUNATELY, the downsides of prolonged cortisone use are legion and can be serious. Loss of bone density, serous weight gain and other health risks, loss of calcium, increase of stress and immunospressancy and the inability of your body to eventually make it by itself. It is basically like putting your body on afterburner 100% of the time, it's unsustainable. They had me on high doses for two years and I lost basically all my teeth, my shoulder bone had to be replaced, and it took me almost 8 years to get my body back to some shape that wasn't putting undue weight and stress on my joints. This is why it is important to see a rheumatologist and start the path to finding a medication for you that actually controls the RA itself, not just a bazooka to blast away the symptoms. It's funny because when I got cortisone shots in my neck before they fixed my deformed foot (and I was walking crooked), I would feel better all over the week or two after. It also gave me the symptom I always get first with prolonged prednisone use - the candida bacteria in my mouth and nose started to overgrow and I had to go on anti-fungals. Yet another fun side effect of prolonged corticosteroid use. I think your next steps should be rheumatologist and then seeing what they think about steering you away from steroid use. Unfortunately you can only inject steroids so many times into joints before the benefits get less and less and the risk of damage gets more and more.

    As for leflunomide I have been on that also. It is in the chemo family, so you might lose hair, something I wish they told me. If you want to try to preserve it make sure you look into the spray and stuff like that. Usually, the leflunomide is paired with a biologic medicine, another thing you want to ask your rheumatologist about. There are so many out now that there is a good chance you can find one now, in the early days, that may work to control your RA enough that you may not have to experience joint damage at all! Wouldn't that be something! In the meantime just remember you are not alone and if there's anything we can do to help, just let us know. Keep on keepin' on, DPM

    1. Seems absolutely ridiculous that insurance would rather weaken immune systems becuase that can cause so many more problems! So biologics don't weaken weaken the immune system? If not then this would seem the gold standard!

    2. it certainly does seem like insurance companies often do things backwards. (Or, if not backward, at least not "patient and health first".) I'm crossing my fingers that you can get some relief soon! -- Warmly, Christine (Team Member)

  2. Hi . There is only so much I can add to extensive experience and knowledge that has. Daniel mentioned the number of treatments now and I want to share this article from our editorial team on RA medications so you can see the types and links to more information: My wife, Kelly Mack (a contributor here), was, like Daniel, diagnosed as a child, many years ago, before modern treatments - with the damage to show for it. Six years ago she started a new biologic that brought her inflammation numbers into the normal range for the first time. I mention this because there is hope, especially, as Daniel said, if you can find something before major damage happens.

    Concerning the steroids, a quick search on our site on it or prednisone will back up what Daniel said - plenty of people talking about how it helped, but also the numerous problems and how they wish they could avoid it. Kelly happens to be one of the people who can take low-dose prednisone long-term with very few side effects. That said, the dose is at such a level that (5mg) it can only be supplemental to a primary treatment to control the autoimmune inflammatory response (in her case a biologic).

    I finally want to note that many here get your concerns about the treatments. One of our patient leaders referred to treatment decisions as the risk-to-risk ratio. I can tell you Kelly has used a wheelchair since her teens. Her case is considered extreme, but we have had the conversation with her rheumatologist more than once about the hope that kids diagnosed today won't get the same level of damage due to treatments like she is on now controlling it. Of course, everyone has to make their own choices based on their unique circumstances and what they feel is best for them. What ever you choose to take, make sure to monitor it and any potential effects with your doctor. Know that, whatever you decide, this community is here for you and please feel free to keep us posted and to ask additional questions. Best, Richard ( Team)

    1. I have read a number of your posts on this site in the last few days of perusing the multitude of articles and discussions. I know I'm lucky to not have had RA at a younger age, especially back when there was a serious lack of medications more targeted to this disease. I have a friend who is 62 and has had RA for 26 years, just before the 1999 era of cancer drugs & biologics. She suffered major damage - most of her joints are metal, either full replacement or nothing left but steel rods and pins. I definitely am thankful that I'm on the beginning end of this with a myriad of meds to try! Hers is now under control with a once weekly injection of Humira and weekly injection of methotrexate, plus 9 daily pills to help with side effects, and at flare times she can take as many as 14 pills a day. Hell of a regimen. She has progressive RA and I'm hoping I don't...doesn't look like it at this point.
      I appreciate your feedback and your dedication to helping others on this site!

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